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Tuesday, March 13, 2012

Special Needs: Limitation or Liberation?

Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special NeedsThis post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.
My child Matthew has several special needs. He is a remarkable kid. He is outgoing, charismatic, charming, funny, and enthusiastic. If I ask him to help with some random task like laundry or cooking, his answer is invariably "YEAH SURE!" Going on a trip to the dump? Fetching the mail? Clipping the dog's toenails? He's so keen it's hysterical. He is also one of the hardest working, most persistent kids I know. It takes him so much effort to learn or master some things and he just keeps plugging away. It really seems like if there is a condition or syndrome to be had, Matthew has it, and yet he keeps on trucking despite them all, with no self pity. Just enthusiasm. Although he is remarkable and keen, he does have special needs. He has speech and language problems, bladder problems, and a learning disability.

When we adopted him he was fifteen months old, and he was...a handful...from the first day. Toddler adoptions are classified as 'special needs' adoptions because children at this age have the most difficulty adjusting simply because of their age. They are old enough to grasp the scope of loss and change they experience when being adopted, but they are not old enough to have developed the language skills to help prepare them and to process their grief. Matthew's grief was particularly deep, and his personality was more intense than any child we knew. On top of the regular special needs classification of being an adopted toddler, he had difficulties with emotional self regulation, chronic ear infections with hearing loss, allergies, and 'tunnel vision.' He cried a LOT. Whenever he was emotionally 'off,' he would hold his breath, turn blue, and pass out. He was emotionally off all. the. time. An average day saw three to five breath holding spells, and a bad day had upwards of nine or ten. He had so much to cope with, poor guy. And oh my gosh, man, so did we.
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Matthew, 2007, goofing around

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Sometimes, he showed veins of brilliance, and other times basic life skills eluded him. I was constantly terrified that somehow, it was all my fault. I still am. (Society does not help with this, as any deviation from normal in children is placed at the feet of their parents: do they discipline enough? Too much? What do they feed him? How often? Does his diet have gluten/dairy/food dye/sugar/HFCS/GMO/pesticides/hormones/meat/whatever else? Do they read to him? Do they model good values? Are they patient enough? Loving enough? Firm enough? Consistent enough? Like, oh my goodness). The criticism is one of the hardest things to navigate, because people talk more than they listen, and they have all kinds of opinions to tell me. Speech therapy is wrong and a waste of money; he will outgrow his speech problems! Give him time! [meanwhile at 4 years old his vocabulary was about 40 words, his initial stutter was between 60 and 90 seconds, and nobody could understand even his most basic speech: private speech therapy was one of the best things we ever did for this child! Communication is so basic to life]. Don't let the school test him for learning disabilities because then he will be labeled. Don't let 'them' label your kid! The bottom line is this: WE KNOW OUR KID BEST. Close family and friends see how Matthew operates and they get it. They see that his wiring is different and that we have a lot of work to do to help him succeed and to keep his self esteem intact. The rest of the world has no bloody idea what they are talking about. I wish that, rather than tell me what they think, people would ask me about it. Ask me my opinion on labeling children, and specialized therapists, and rambunctious children getting disciplined in school, and then listen instead of talk.

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2008

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Matthew could scale the exterior of any playground by the time he was two years old Yet at seven, he still solves interpersonal conflict by biting. He still has zero awareness of vehicle traffic. He is considered the class bully, and always mysteriously has his pockets full of significant amounts of change. He scores far above average in nonverbal abstract logic tests, but he cannot remember three item number sequences. He still has trouble with the letter Q. He builds massive, intricate, multi system lego worlds with the tiniest attention to detail, but his printing is poor enough to qualify for an occupational therapy referral.

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2009

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We don't actually know "what" he has, because we are in the end stages of testing with the school psychologist, but it looks as though he definitely has a learning disability. The one that fits the most of his quirks seems to be ADD, although we won't know for certain for another few months. What does a diagnosis like this feel like? It feels like a liberation. After years of raising a child with very poor impulse control, little emotional self regulation, the sweetest of smiles, but the most frustratingly poor memory, it feels like a light went on in our house and sweet Jesus the relief after so long of stumbling around in the dark! This is not like a disease diagnosis where one day you have a healthy, normal child and the next you have bad news, this is blueprints after six years of being lost in a labyrinth. I feel relieved. I feel hope. I feel power! I knew my kid was intelligent and capable, but had difficulty unlocking that. I often feel like I spend so much energy and time 'managing' his behaviour that I cannot enjoy him. Our relationship is filled with 'don't' and 'do,' and a constant string of coping mechanisms to fill his need for an externalized impulse control system, and it is not what I want for us. Brent and I have been known to say, "I don't want to be telling you what to do all the time. I would love to just be with you and enjoy your company." Which statement has little effect, but is true of how we feel. So having ADD is not just about succeeding in school. It is about improving his most basic relationships in life, and allowing his charisma and vibrancy to take the front seat. I have said before that Matthew has a spiral intelligence and that a diagnosis and treatment will help him unleash this on a world that operates almost exclusively in parallel lines, and this is true in intellectual realms and also in relationships.

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2010, with his older brother

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I understand the fear of limitation that stands behind avoiding labels and avoiding special needs diagnoses. No one wants to hear that their child lives outside the normal because our children are so amazing and precious, and we don't want them limited or hurt. But how boring would the world be, filled with clones all wired the same? Isn't variety beautiful? Isn't a mind which thinks in spirals good for the world? There is so much beauty in the way his brain works, and how those who engage with him can be stretched and turned in unique ways as they try to understand him and help him succeed. Without him, and other children like him who have special needs, the world would have less compassion in it, less empathy, and far less creativity. Knowing my child liberates me from my previous way of thinking, and opens my mind to the deep value in diversity. And it forces me to consider what truly makes a person valuable. Intelligence? Success? Potential? Capacity for love? Uniqueness? Uniformity? Productivity? It forces me to think outside the box for solutions to problems I didn't know existed.A diagnosis liberates us as Matthew's parents, because it gives us power to tackle the root cause of so many of his difficulties. It liberates Matthew, because it gives him the opportunity to master things that were difficult for him before, and brings more peace to his relationships. And it liberates those around him by stretching their imaginations around him and the way he is. It liberates us from that linear, parallel line approach to life and molds us so that we fit around circular patterns as well as parallel ones. Matthew has limitations in life because of his learning disability, and there is potential for him to be further limited by this diagnosis if teachers or other adults in his life are unable to see beyond it. But for now, mostly, we see freedom.

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2011, Christmas

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***Visit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants:(This list will be live and updated by afternoon March 13 with all the carnival links.)

Parenting A Child With Neutropenia — Jennifer at Hybrid Rasta Mama discusses the challenge of parenting a young child who cannot produce enough neutrophils to fight off bacterial infections.

How I Love My High Need Baby — Shannon at GrowingSlower was shocked to find she is parenting a high-needs baby, but she's surviving thanks to attachment parenting.

We're a Lot Like You — kaidera at Our Little Acorn talks about how her family is similar to others, even with all their special needs

The Emotional Components of Bonding with Preemies — Having a premature baby can bring on many unexpected emotions for parents, but working through those emotions can bring about a wonderful bonding experience. Adrienne at Natural Parents Network shares.

Parenting the Perfectionist Child — Mandy at Living Peacefully with Children discusses that as parents of gifted children, we are in the unique position to help them develop the positive aspects of their perfectionism.

Accommodating Others' Food Allergies — Ever wonder how to handle another family's food allergies or whether you should just skip the play date altogether? At Code Name: Mama, Dionna's friend Kellie (whose family has a host of allergies) shares how grateful she is when friends welcome them, as well as a list of easy snacks you can consider.

Only make promises you can keep — Growing up the child of a parent with a chronic illness left a lasting impact on Laura of A Pug in the Kitchen and what she is willing to promise for the future.

A Mom and Her Son — Jen at Our Muddy Boots was fortunate to work with a wonderful family for several summers, seeing the mother of this autistic son be his advocate, but not in the ways she thought.

When Special Needs Looks "Normal" — Amy at Anktangle writes about her experience with mothering a son who has Sensory Processing Disorder. She offers some tips (for strangers, friends, and loved ones) on how to best support a family dealing with this particular neurological challenge.

11 comments:

Ah, so much wisdom here. Thank you for sharing your story and Matthew's story. He sounds like an incredible child. I've often wondered how various families feel about labels — are they limiting or not? I can totally see your point of view on that, and this was very eye-opening. When I was in college, I first stumbled upon a description of OCD, and it was so reassuring to realize that the craziness inside my head was not unique to me, and that there were coping mechanisms available. So I get it that labels can actually be a very good and helpful thing.

I can relate to so much of what you've written here! I also find the diagnosis/label liberating and freeing, because it helps us to understand what is going on with Daniel, and to explain it to others. I, too, have dealt with way more than my fair share of blame and criticism for my son's behavior, and I think it's high time everyone stops doing this to parents! The differences in our minds truly are remarkable, and I agree that they are a huge gift to all of us, to remind us how to be flexible, to celebrate the ways in which we are unique from each other, and to learn patience and understanding. Thanks for this post!

What a lot you've given me to think about! The one thing that stood out to me initially was this: "Society does not help with this, as any deviation from normal in children is placed at the feet of their parents." Along with the list of questions that truly are up to the parents - WOW. How easily it would be to fall into a guilt trap. Or to try a multitude of things that might not be right for your family, just b/c an expert suggested them. The intensity is incredible!!Thank you for sharing your story!

You are amazing, Melissa, and I'm so glad you wrote this! I have heard the concerns about limiting children from so many parents, and it's really insightful to see another point of view. Hooray for Matthew's (and your) liberation!

Your writing is fantastic, too, on another note. Maybe one day you can write a book with all this wisdom and pareting mojo you've acquired!

I had never thought about how the process of determining what might be affecting your child is so full of blame. Thank you for bringing that to light.

While I suppose some of those lines of questioning (like diet, etc.) might be relevant to some children, your perspective gives me a better idea of how to better support my friends through this process. And really, I think that's what most of us mom's WANT to do, even if we don't.

I read a book some time ago called something like the gift of dyslexia, and the idea of it was similar to what you described. This was specific to dyslexia, but it pointed out how differently the brain of someone with dyslexia works, and how very important those ways of looking at things are to our society. Really interesting.

Awesome! So much wisdom in this post! For us too, getting a dx was a relief. Like a food label, I suddenly knew what was "in" my kid and how to treat him. I could call up an SLP and say "he has this, this, this can you help him?" It felt, oddly, good.

"This is not like a disease diagnosis where one day you have a healthy, normal child and the next you have bad news, this is blueprints after six years of being lost in a labyrinth."

Yes, this! This whole post really resonates with me. I really wish we had some kind of diagnosis. It drives me crazy not knowing what is going on with my child, and whether her challenges are something she will "grow out of" or something we will continue to deal with.

Oh yes, about the poisonous blame/self-blame that is heaped on us parents by society — while at the same time society is ACTUALLY STRUCTURED to do nothing but feed us those "poisons" that we parents (mothers, usually) are supposed to keep our children away from.

I'm very, very curious about this "spiral thinking" that you talk about in this post. Have you written about it before? I want to know more....